Holding on just a little longer


I sort of feel like this poor sap right now.  I’m trying to waterski but can’t get up.  I also refuse to let go of the rope, so the boat keeps dragging me.  I’m not letting go even though I know there is no way from this position to pop up on my skis.  So I will just enjoy the oxygen-less ride under a foot of water a little longer until the boat driver cuts the engine.  

I finished my 30th session of radiation today!  That was originally my full dosage but about half way through treatment when they determined my cancer was not acting right they increased me to 33.  Only.  Three. More.


You’ll notice that my skin is very dark around my mouth and cheeks.  It’s like that all the way down my neck and to my clavicle too.  The radiation essentially sunburns you on both the outside and inside of any area it is shot at.  

This past week I was left with only a very scratchy, whispery voice.  It hurts to talk so I did very little of it this week except for one night when I met with friends that I made in Puerto Rico that were in town.  

The mouth sores are everywhere so I typically have a mouth full of pebble ice that helps numb and cool an otherwise painful region.  The throat has been too sore to swallow anything other than water / melted ice and even that now has become a challenge.  I’m on several different pain meds that help quite a bit, but each come with various levels of side effects that render me pretty useless outside of my recliner.  

The weight has stayed pretty consistent now for the past week between 163 and 166.   The feeding tube isn’t helping me put on weight but has definitely helped me stabilize.  

The kids come up to my room each night and sing to me and say their prayers with me.  They have been so sweet and strong through this whole thing.  

Lastly, while I can’t eat or drink I still crave lots of things.  I made list of all the stuff I will plan to eat when my mouth is in shape.  Ice cold anything sounds good all the time!  Even just the smells of certain things have been really “appetizing” so a few times this week I’ve cracked open a vanilla root beer and just smelled it over the course of an hour.  

So I’m basically in survival mode. A few more days. Get through it. Doesn’t have to be pretty.  Find ways to help the time pass quickly.

Thank you fsir the continued prayers, notes of encouragement, etc that always seem to brighten my day.  We got this.  Home stretch.  

Deriving Strength From Others

It has been an intense 10 days!  I finished my 24th radiation treatment today (FLY THE W!) and am feeling better today than I have the past week, but it has been a hard slog recently.

Uplifted

I could write a post everyday about some amazing thing that Camilla does to help me get through each day.  She hates the attention so I’ll follow her wishes by not continually exposing her greatness…but it is International Women’s Day so can I just say it is an honor, thrill, and blessing to have a co-founder in life like Camilla.

One of the silver linings to this experience is that it has reconnected me with friends and family that I hadn’t talked with in a while.  So many people continue to reach out regularly with encouraging texts, thoughtful notes, and gifts — they all seem to get to me at just the right moment and bolster my spirits.  One of my friends at church on Sunday walked up and just gave me a hug and whispered “just wanted to tell you that I love you man”.  It was really simple and really impactful.  Monday of this week was a tough one and “by chance” I had a friend in town from Arizona who was able to spend half the day with me in the hospital as I got fluids through an IV.  I’ve got a few friends coming in from out of town later this month that I haven’t seen in a long time.

The other silver lining is that I’ve met some amazing people also going through cancer treatment.  There are 4-5 people at my daily radiation sessions and 2-3 people at the chemo shop that I’ve started to become friends with.  We root for each other.  We commiserate with each other.  We share tips and tricks to managing side effects.  We talk about our families to each other.  They are so positive and so uplifting to be around.

A rough week

My last post was when I had the misconception that a feeding tube followed by a constant flow of calories would quickly get me back up to my fighting weight and feeling better.  I was so young and naive back then 🙂

I did get a feeding tube placed 10 days ago but it felt like I took several steps backward before I could really move forward.  I haven’t gained any weight back but I have not lost any more weight so maybe the 165-170 range will just be the new me for a few more months.

The actual procedure of getting the feeding tube placed was not terrible.  They basically punched a small hole in the top of my abdomen and inserted a tub that is as big around as a pencil.  The tube extends out about 8 inches from my stomach and has a cap on it.  The tube is semi-floppy and allows me to bend it upward and tape it to my lower chest.  To feed myself I pull the cap off and insert a larger syringe and then pour formula in the top of the syringe, letting gravity pour it into my stomach rather than pushing it through.

A few hours after the procedure and right as I was getting ready to leave the outpatient center at the hospital, I started to feel the pain and the cramps.  The tube goes through the top abdominal muscle and as I cramped the muscle would tug on the new wound.  It was a pretty miserable 24 hours after the procedure but was able to slowly get some “delicious” unflavored high caloric formula in me.

By the time Wednesday rolled around I was getting the hang of things and having minimal cramping.  Wednesday was chemo day and I got a “mega dose”.  I usually get about 80 ML of my chemo drug and this dose was ramped up to 200 ML.  The good news is that the new dose is only given once every three weeks so it gives me two weeks chemo-free.  I could really feel the impact of the higher chemo dose.  Mouth sores were worse, fatigue was more intense and lasted much longer (still feeling it!), and I’ve had some nausea.  For the first time during treatment I threw up…and threw up….and threw up.  I’ve got good meds that mostly control the nausea but sometimes I just gag on all the junk in my mouth and lose all the hard work I put in on the feeding tube during the day.  I spent a few hours on Monday getting some fluids via an IV to stay hydrated and I’m doing lots of water and pedialite through the feeding tube.

I know I’m a broken record on this, but it is just so important — stay present, stay in the moment, face today’s issues and don’t worry about tomorrow or next month.  That’s my goal!

 

Things I Thought I’d Never Say

Up until this past week, I had never said any of the phrases below:

  • No, I don’t want any ice cream.
  • Oh cool, the hair on my tongue fell off.  (*explanation below)
  • I can’t wait until the feeding tube gets put in.

Cancer can make you do, say, and feel things you never had imagined.

*So hair on the tongue is a real thing (I know, gross).  The right side of my tongue and the floor of my mouth is made from parts of my left arm….that had hair on it.  About 3 weeks after the surgery I started to notice hair popping up where the new tissue was transplanted.  I couldn’t feel it but I could definitely see it.  The radiation has taken care of all that now.

I’ve now been through 16 treatments of radiation and going back to what I said before, it feels like someone lit a blow torch in my mouth and throat.  The sores on the insides of my cheeks, along my gums, and on my tongue have made it really difficult to eat and pretty difficult to talk.  I’ve got several remedies to help me manage — pebble ice, pain meds, and 3 different mouth rinses.  The cruelest part of it all is that my go to comfort food has always been ice cream, but anything with sugar in it burns the sores so badly that I won’t even touch it.  A sugarless Jarem…can you imagine?

I had a lot of bravado 4 weeks ago when I popped off to my radiation oncologist that I would not need a feeding tube.  That’s how I would show my toughness — eating.  Here’s how tough I am…tonight our neighbor brought over a peanut butter chocolate cookie dessert that I love and because I couldn’t eat it I started to tear up.  Grown man.  Crying over some cookies.  Real life.

Tomorrow I will have a “g-tube” placed into my stomach so that I can feed myself without wrecking my mouth and throat.  I am ready for it!  I’ve felt the impact of not getting proper nutrition and losing weight.  I was about 190 pounds in December and I’m now down to 168 pounds.  I need to get back up to my fighting weight.

One of the things that I am gaining an appreciation for is UNCERTAINTY.  As someone with cancer, uncertainty becomes as much of a part of your life as the actual cancer. The uncertainty is endless.

One of my favorite books is called “The Happiness Advantage” which presents the case that happiness breads success (and not the other way around).  One characteristic of happy people is that they tend to believe that their actions effect their outcomes.  While I’m still a believer in that idea, cancer is such a puzzling and illogical experience that it replaces any sense of control or belief in cause & effect relationships with uncertainty.  

As far as I can tell, uncertainty isn’t malignant by nature, but it can become so.  Does the uncertainty metastasize within us and make us bitter or scared or paralyzed from doing what can make today great?  Or can we live life today in a way that is joyous and productive and right before God, while having no guarantees of what tomorrow or the next month or next year holds?

 

First week of radiation, chemo, and trying to stay PRESENT

We are wrapping up the first week of radiation and chemo treatment.  5 radiation treatments, one each morning, and 1 chemo treatment on Wednesday afternoon.  It’s “comforting” to know that whatever we can’t destroy with the blow torch (radiation), we’ll get by poisoning (chemo) the ground water…there’s like a hundred other metaphors for this treatment so pick your favorite 🙂

IMG_7018.JPG

First chemo treatment.  I’m the only dude under 70 getting chemo at my facility so I didn’t get as many laughs from shirt as I was hoping for.

 

The short version of this week’s treatment is that it was manageable.  I feel blah.  Not bad, just blah.

The most noticeable side effect has been the fatigue.  I felt it hit about 24 hours after chemo (Thursday afternoon) and then it hit even heavier after 48 hours (this afternoon).  I have also felt queasy, but not fully nauseated.  I’ve got 3 different anti-nausea medications running through me and I can feel this battle going on in my gut — the body wants to be sick but the meds aren’t letting it.

I’m just starting to feel the radiation effects…parts of the tongue feel like I sipped hot chocolate that was way too hot and I can feel the start of a sunburn on my neck and jaw line.  There has been some increasing fatigue as well with each successive treatment.

img_6997

TruBeam radiation machine in the background that rotates around me 360 degrees while I’m strapped into the movable bed that you see on the right of the picture.  The placement of the bed, the measurement of the dosage, and the path the machine takes around my face are all meticulously calculated.

 

img_7010

Getting all snuggled in on the bed.  I’m strapped in like this for 5 minutes or so during each treatment and its not as bad as it looks (they have a U2 pandora channel playing to calm your nerves).

 

What I’ve struggled with this week is keeping my mind in the present.  During the surgery recovery I could focus each day on a few small steps forward.  I could feel my body making progress and that helped keep my mind in the moment rather than getting overwhelmed by the entire treatment process I’m facing.

Chemo and radiation feel like the opposite of recovery.  Every day feels like a small step backward, physically.  I know that the side effects are cumulative and that the worst I will likely feel will be at the end of the sixth week.  So it’s tough to not take what I’ve felt during the first five days and extrapolate to how bad this is going to get.

What has really helped me this week is trying to maintain whatever normalcy I can.  Taking the kids to school.  Going to work for part of the day.  Eating dinner with the family.  Reading lots of articles about the Cubs.  Listening to Camilla describe her CrossFit workouts (what is a thruster?).  All those things make me feel normal and happy.

Some passages of scripture this week really helped my mindset — none more so than Ether 6:1-12 (scripture from the Book of Mormon).  While the effects of chemo and radiation treatment might feel like I’m moving backwards,  I realize that it is actually pushing / pulling / driving / pounding me toward the ultimate destination.  There are no speedboats or cruise ships on this ocean voyage.  This is about loading up in the wooden barge and hanging on for the ride as the Lord blows the wind and waves toward the promised land.

Feels like I should get a Caribbean cruise booked for when this is all over.

Prepping for Radiation and Chemo 

My parents and siblings made t-shirts with the equation that we are trying to prove true.


My beauty mask, custom made.  Keeps the face in the right position for the radiation treatment.


My arm 29 days after surgery.  It is seldomly painful and healed up pretty nicely (see the previous picture 15 days after surgery).  As expected, the arm is still pretty weak, but so is my good arm 🙂


My favorite quote of the week:

Without adversity, we may tend to forget the divine purpose of mortality and live our lives focused on the transitory things of the world.

Ronald Poelman
The past ten days or so have been great. I feel well and have spent lots of time with my wife and kids. Trying to keep up with Camilla’s busy schedule and all she does for the kids almost had me wondering if I needed to check back into the hospital. I finally told her this week that I needed to go back to work so that I could get some rest.  

Monday (2/6) starts the next phase of treatment.  I will go to radiation therapy Monday through Friday for six weeks.  I slip into the mask pictured above which is then bolted into place on the table.  The radiation machine will shoot beams into all the areas that have been programmed into the computer. In this way they can be extremely targeted and accurate in what they scorch.  One treatment lasts less than ten minutes.  

I will be doing chemo therapy treatments once a week for six weeks in addition to the radiation. This will improve the effectiveness of the radiation (and amplify the side effects).  No pain no gain, said someone once… The chemo is administered via an IV that they put into a port I have in my chest.  It takes 3-4 hours for one treatment.  Time to rewatch the World Series (for the third time).  

I have always loved to read, and the time away from work I have had this month has reacquainted me with that hobby.  Some favorites that I read the pst six weeks:

  • How will you measure your life by Clayton Christensen
  • Shoe Dog by Phil Knight (Nike founder)
  • Screwtape letters by CS Lewis

And there is no better TV out there than the 30 for 30 ESPN series.  Thank you Bill Simmons.

Every time I have gone to search for answers or inspiration I have found some awesome passage in scripture or published talk from one of my church’s leaders.  What a time to be alive where information is so readily available. My favorite talk this week was listed above by Ronald Poelman.  

Gratitude & Homemade Butterfinger Ice Cream

Gratitude is a mark of a noble soul and a refined character. We like to be around those who are grateful. They tend to brighten all around them. They make others feel better about themselves. They tend to be more humble, more joyful, more likable.

Joseph Wirthlin

These next two weeks are kind of like the calm before the storm.  Radiation and Chemo Therapy start two weeks from tomorrow and so my main goals right now are 1) to let my body continue healing from surgery, and 2) to fatten up.  Thanks to so many of you that are helping me on the latter.  It has been cheesecake, cookies, shakes, M&M’s, and ice cream mixed with “eating spacers” like pasta, bread, oatmeal, soups, pizza, and pork sliders.  I’ve got goals people.

On my two week post surgery date (January 19th), we took treats and thank you cards back to the ICU where nurses and doctors took care of me around the clock for my first 3 days in the hospital.  As a token of our appreciation for keeping me alive, we stocked their break room with homemade butterfinger ice cream….so basically, we are even now.

Tammy was the only person there when I went into the ICU break room.  Tammy took care of me from 7 pm Saturday night to 7 am Sunday morning 48 hours after surgery.  It was my last night in the ICU and right before she came on shift my pain broke out and was almost unbearable.  I was miserable for several hours until she received approval to set me up with PCA hydromorphone (an extremely powerful narcotic delivered through my IV with a button that would let me get another small dose every 10 minutes).  Pain problem solved.

As I put the ice cream on the break room table I said, “Hi Tammy.  Do you remember me?”

“….oh hi there….”  She had no idea who I was.

“It’s me, Jarem.  You took care of me about 10 days ago in room —-“

“Oh my gosh, Jarem!  Are you serious?  Look at you!  I didn’t even recognize you.  Oh my gosh….no staples! your face! you are walking around!  Look at you!”

As we talked for a few minutes Tammy told me that she really felt sympathy for me during that long Saturday night we passed.  She got emotional when she told me, “I just really wanted you to do well.  I was pulling for you.  It means a lot to see you like this.  I’m so happy for you.”

We talked for about five minutes and I was able to thank her for caring for me and how a patient can feel it when a nurse was really pulling for them.  I needed to be able to say those things more than she needed to hear them.  She is an amazing nurse and she knows that and she doesn’t even blink when she sees a sedated case like mine roll through the ICU doors.  It felt good to say “thank you” and genuinely express gratitude.  It always does.

IMG_6893.JPG

I don’t know the best way to express my gratitude for what my family has received from so many people during this experiencde, but I don’t believe there is a really a wrong way to do it either.  My preferred approach would be in-person and one-on-one conversation like I had with Tammy.  To me, there is something so cathartic about those types of interactions, and I look forward to having many more of them.

But this approach isn’t possible with the hundreds of people for whom we feel gratitude — whether for your prayers and faith, notes of encouragement, help with our kids, or just helping us do life with all this stuff going on.  Our goal will be to become more grateful human beings, like Joseph Wirthlin described.  To brighten all around us.  To make others feel better about themselves.  To live in thanksgiving daily.

And we will also increase the output of our homemade ice cream machine.

Speech Impact 17 Days After Hemiglossectomy

17 days after having 40% of my tongue removed (“hemiglossectomy”) and reconstructed with​​ tissue and arteries from my arm (“free flap”), I have what I consider a very minor speech impediment and it’s getting better everyday.  

Compare this video to the one I posted 72 hours after surgery which was the first time I felt like I could speak and others would understand me without having to continually repeat words.